Zusammenfassung
Einleitung
Intelligenzminderung und Entwicklungsstörungen („intellectual and developmental disabilities“ [IDD]) umfassen Zustände, die mit körperlichen Funktionsstörungen, Lern‑, Sprach‑, Verhaltensstörungen und/oder geistiger Behinderung assoziiert sind. Schmerz ist eine häufige sekundäre Störung, die die funktionellen Fähigkeiten und die Lebensqualität beeinträchtigt.
Zielsetzung
Der vorliegende Beitrag thematisiert die wissenschaftlichen und klinischen Herausforderungen der Schmerzerfassung und -therapie bei Personen mit schweren IDD.
Methoden
Dieses klinische Update ist assoziiert an die IASP-Kampagne „Global Year Against Pain in the Most Vulnerable“ von 2019 und fasst selektiv wiederkehrende Probleme sowie die beste Evidenz und das beste praktische Vorgehen zusammen.
Ergebnisse
In der Schmerzforschung der vergangenen zehn Jahre wurden unter anderem standardisierte Instrumente der Schmerzbeurteilung für Personen mit schweren IDD entwickelt. Dennoch gibt es kaum empirische Belege, dass Schmerz klinisch besser erfasst oder therapiert wird. Die Datenlage, auf die sich wirksame Schmerztherapieverfahren in der Praxis stützen können, ist limitiert. Daher sind Behandlungsansätze weitgehend empirisch und hoch variabel. Das ist problematisch, da Personen mit IDD dem Risiko ausgesetzt sind, arzneimittelbedingte Nebenwirkungen zu entwickeln. Zudem können Behandlungsansätze, die in anderen Populationen wirksam sind, den Schmerz in IDD-Populationen verstärken. In der Forschung stellen folgende Aspekte besondere Herausforderungen dar: systematische Verzerrungen bei Schmerzscores zur Selbst- und Fremdeinschätzung; Identifikation valider Endpunkte für Therapiestudien; Erzielung einer ausreichenden statistischen Power angesichts kleiner Stichproben; fehlende Möglichkeit einer einfachen Untersuchung der zugrunde liegenden Schmerzmechanismen aufgrund der beeinträchtigten Fähigkeit zur Selbsteinschätzung.
Schlussfolgerung
Trotz der kritischen Herausforderungen gibt es immer wieder neue Entwicklungen in der Forschung sowie Aktivitäten zum Wissenstransfer bezüglich Schmerz und IDD. Des Weiteren gibt es laufende internationale Kooperationen.
Abstract
Introduction
Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life.
Objectives
This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD.
Methods
This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice.
Results
The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report.
Conclusion
Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.
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Danksagung
Die Tätigkeit der Autoren wurde teils durch NICHD Grant Nr. 73126 und 94581 (C.C.B., F.J.S.), den Mayday Fund (C.C.B., F.J.S.), Birkmaier- und McKnight-Professuren (F.J.S.), die Gillette Children’s Foundation (C.C.B.) und den Telemark Hospital Research Fund (R.D.A.) unterstützt.
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Interessenkonflikt
C.C. Barney, R.D. Andersen, R. Defrin, L.M. Genik, B.E. McGuire und F.J. Symons geben an, dass kein Interessenkonflikt besteht.
Übersetzung: Ansgar Schlichting
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R.D. Andersen, R. Defrin, L.M. Genik, B.E. McGuire und F.J. Symons trugen zu gleichen Teilen zur Erstellung dieses Manuskripts bei und sind in alphabetischer Reihenfolge aufgeführt.
Deutsche Fassung von: Barney CC, Andersen RD, Defrin R et al. (2020) Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. Pain Clinical Updates in Pain Reports. PR9 5 (2020) e822. https://doi.org/10.1097/PR9.0000000000000822. Publikation auf Deutsch mit Genehmigung der International Association for the Study of Pain und der Autoren. Verantwortlich: Frau Prof. Dr. C. Sommer, Würzburg.
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Barney, C.C., Andersen, R.D., Defrin, R. et al. Herausforderungen der Schmerzerfassung und -therapie bei Personen mit Intelligenzminderung und Entwicklungsstörungen. Schmerz 36, 49–58 (2022). https://doi.org/10.1007/s00482-021-00589-8
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DOI: https://doi.org/10.1007/s00482-021-00589-8
Schlüsselwörter
- Schmerz
- Beschwerden
- Intelligenzminderung und Entwicklungsstörungen
- Quantitative sensorische Testung
- Zerebralparese
- Kognitive Einschränkung